Whatever works...

It's been a great week for Dad. Something I said last week led him to believe that he owns the place he lives in and that everyone works for him. He then continued to concoct a story that he inherited the entire place from his Dad and that it's his job to take care of it. THIS HAS MADE HIM VERY HAPPY and much less anxious -- whatever works!!! I didn't get one call from Whittier this week and the timing is great since Mom, Megan and I are leaving for five days to New York.

My Aunt Lisa came to visit Dad today with us and there was a big Oktoberfest celebration with authentic German dancing and Root Beer. He was in great spirits and started dancing so ridiculously during The Chicken Dance. We had all formed a circle when he broke free and started letting loose in the middle of the circle all while wearing this big floppy hat... I could NOT stop laughing.

The video below shows some of his great moves... too bad it cuts off right as he was about to enter the circle....

Goodbye Friend and Neighbor

Yesterday morning Ruth Sciumbato, our good friend and Neighbor for 20 years in Fallbrook, passed away from Alzheimer's. Her husband Pete became her sole caregiver although he did have some help from nurses, family, and visits from my Mom. Pete said he 'did the best he could' and honestly he did better than that. We all know the toll that this disease can take on caregivers.

I will always remember seeing Ruth wave at us from her kitchen window while we played in our backyard. And during this time of year she would start making her zucchini bread and persimmon cookies. Let's not forget how much Megan loved the chocolate mints that were always offered when we came over to visit. It was like having a second set of grandparents right next door! Ruth was such a bright presence with a warm smile and could always make us giggle.

Most of all, Pete and Ruth were a wonderful example of a Happily Married Couple - Married for 61 years!!!! Their love for each other was apparent in everything they did including an emphasis on family - 1 Son, 1 Daughter, 4 Granddaughters, and 1 Great Grandson. Pete and Ruth's family is relatively close by, so I'm sure that Pete will eventually be okay as he stumbles into this new part of life. He's also got a great neighbor who doesn't mind sharing a slice of pie and coffee with him. ;) (my mom)

We couldn't have asked for a better neighbor and friend for 20 years. Goodnight Ruth. You are free from Alzheimer's and although you will be missed, we all now have one more Angel watching over us.

Thank You!

I just got a personal phone call from the Alzheimer's Association branch in Irvine and the first thing out of his mouth was, "Wow!" (We're currently at $1405.00.) He thanked us for doing such a great job fund-raising for the Memory Walk and encouraged us to keep it up. In turn then, I need to thank all of you for your donations and support. We obviously couldn't do it without any of you. If you still want to donate you can click on the link to the right on the blog entitled Memory Walk - Join our Team. (you don't have to join the team to donate)

Another person I need to thank is Wendy from the VA in Austin. I am still dealing with all these hospital bills from when Dad had stitches after running away in April. The total amount comes to around almost $10,000 including the Ambulance Ride. Since Dad only has Medicare Part A and goes to VA for everything else, he qualifies for assistance from the VA to help cover the cost of those bills. I spent hours sending bills and information to the VA only to be written a letter saying that we were rejected because we were missing papers. Wendy was my savior last week. She told me what forms she needed and when the hospital billing office played dumb, she PERSONALLY called them and requested all the correct paperwork. As slow as the VA usually is with everything they do, Wendy made progress happen within in 30 minutes. I could not believe it. That was just the first step in getting these bills taken care of, but at least it's a step in the right direction!

If you read yesterday's blog, you know that my Dad had a special visit from his Brother Ron and his wife Linda. They drove down from Oxnard to see Dad and had this to say on my Facebook page... "We r with Ron's brother David and he still has a great sense of humor and is good natured. Glad we r here."

Instantly I was happy and then I felt incredibly guilty and almost wanted to cry. All I've been doing is complaining about how annoying Dad is lately, but that message from Ron and Linda really got to me. Considering Dad has Alzheimer's and is frustrated and confused by his state of mind, where he is living, and the loss of control in his life, he really handles it pretty well most of the time. I need to remind myself that when I have 'Dad overload' to sit back and reassess the situation.

Obviously Ron and Linda only witnessed a few moments of Dad's life yesterday, but they could still see all of Dad's good traits shining through this disease. I know that Megan and I get the worst part because Dad needs to complain to someone and since we see him so often, we get the brunt of the complaints. I need to remember that Dad is struggling as much as Megan and I are with this disease. I'm sure he's scared sometimes too.

Wanted to share this picture of Dad with his brother Ron from yesterday.

A Revelation

When I look at my phone messages from the last week, Whittier Place called me Monday, Tuesday, Thursday, Friday, Saturday, and Sunday. And we visited him on Wednesday (and today). No days off from Dad this week. He's been quite frustrating and I'm sad to say that I am losing my patience. It's difficult to explain how annoying the phone calls are and how we are finding that we don't know what to say to him anymore. (He wants to leave, he's locked in, he has no money, etc.) Blake went with me today to see Dad and afterward made the comment that reading the blog or hearing about our visits is nothing like the real thing... I guess it just seems like a story when I tell it, but it's real life and we deal with it every day.

Both Megan and Blake made the comment that Dad's short term memory seems to be getting even worse. We would spend ten minutes calming him down and then LITERALLY one minute later or less, he would forget anything that we said to calm him down and we'd be back at square one. That's probably the worst part of the phone calls because they only call when he's upset and it's our job to calm him down.

We got a nice surprise today though. Dad's half brother Ron and his wife Linda who live in Oxnard and are making the trip down to see Dad. Unfortunately, I didn't get to see them, but I spent some time making sure Dad knew who was coming. Once he understood who they were, then I would tell him that they were coming today. He would get incredibly excited and shocked and then completely forget. This process was repeated at least 4 times in ten minutes. It kind of made us laugh after the fourth time of telling him because he would act so surprised and shocked every time. (The last time we told him, he actually jumped up and down like a 4 year-old.)

The strangest thing about our visit today was that Dad knew something was wrong with him. He asked me "Is my brain going?" and said, "I could walk down the street with you and I wouldn't remember." (That one gave me chills.) He even said, "Maybe I bumped my head because something is wrong in there." I wonder if a lot of Alzheimer's patients have revelations like that.

He was completely frustrated about the fact that something was wrong with him and it was surreal sitting there with him and listening to him talk about it. Blake was really cute because he told Dad, "You're being too hard on yourself" and Dad looked at him like he was the smartest man in the world. He felt a little better after that and really liked that Blake was there. It's good for him to have another guy around.

We also talked a lot about Dad's daughter Kelly and that's when we took the picture that I posted in the blog. Overall Dad was in good spirits during our visit, but the phone calls that I get are so bad that I always think our visits are going to be the same way. That's usually not the case though. He was still flirting with the staff members... kissed one lady on the cheek, tickled another one on her shoulder, kissed the hand of the lady serving him lunch, asked one lady if she had a sister for him. He had everyone laughing as usual. Why can't you be in that mood all the time Dad? I think that's why the staff can tolerate his lows because his highs are so sweet and funny.

Reunited...

Today the original 4 Brandts were together. We brought Mom to see Dad and he was very happy. When we announced to the staff that 'Paula was here' they started cheering and clapping. Obviously Dad had been driving them crazy about seeing Paula for the past week.

Dad told Mom, "It's been years since I've seen you." Well actually only about 4-5 months, but that probably feels like years to him. When we asked Dad to show us his room, he kept handing Mom pictures of me and Megan like a proud Dad. I do think he understood who she was and that she was our Mom. He called her "The Mom" at one point. And, while we were sitting outside, he looked at her in disbelief and said really loud, "Paula!? I Love You.!" (and he elongated the 'o' in Love) We all laughed and Mom said, "Well, thank you, how nice." :)

His mood was great and we took the opportunity to get a picture of the four of us - reunited. I also attached a photo of the four us around 1995 and the one of us 15 years later. A lot has changed.... I always find myself thinking about how different things are now... It doesn't make me sad or happy... I just find it interesting.

We also got a hold of one of Dad's family members!!! Yay. We may be able to go see Grandma Olive soon. Dad will be extremely happy about that.

I got an email from Alzheimer's.org and there was an article about taking a positive approach to Alzheimer's. And I thought... hey! We do that! All I have to say is if Dad can stay as happy as he has been the last couple of visits then we'll have no choice but to be positive. Of course I know there are bad days lurking, but Thank God they aren't all like that.

Here is a passage from the article that really resonated with me...

"We live, unwittingly, in a world of assumptions: that people will make sense; that they will do certain things; that we agree about time and place; that we can understand and be understood. But when all that unravels, where are we? My answer for Hob and me would be that we lived in an open, shifting, spacious reality where everything was undefined and totally unpredictable. "Wasn't that the way reality is anyway?" you ask. No, this felt quite different. This was a totally new experience. When I was rested and in balance, it was compelling, even exciting because it was so alive and immediate, a perpetual wake-up call to live wholeheartedly in the moment. Meanwhile, it came to me as a revelation that amidst all the losses, the essence of this man I loved was still very much present. Sometimes my own preoccupations obscured my seeing, but astonishingly there he would be the wholesome of his spirit shining through his acuity, his sensitivity, his playfulness and humor all intact."

To read the entire article you can copy and paste this link....
http://www.huffingtonpost.com/marguerite-manteaurao/overcoming-the-alzheimers_b_735860.html

Obsession

I am naming Dad's newest behavioral phase Obsession. (sounds like a perfume huh?) Past phases include 'escape artist', 'anger', 'going off the deep end'...

I characterize a phase as a strange behavioral conduct that consumes him for longer than a week. The last few weeks he would get someone's name in his head and then become obsessed with seeing that person. Right now he is obsessed with 'Paula' (our Mom). The reason I use quotations around her name is that we're pretty sure that most of the time he is confusing her for someone else (mainly he's thinking of his Step-Mom who is 91 years old).

He's driving us crazy because it's like talking to a person that has amnesia every 5 minutes. "What about Paula?" five minutes later "I need to see Paula" three minutes later "Where's Paula" and on and on... We have also talked to him on the phone four times in the past 48 hours about Paula and even visited him and talked about Paula. We have told him numerous times that Paula will visit him next week, but of course he forgets. After the tenth time of him asking about her whereabouts I said nonchalantly, "She's probably dying of the heat right now." It was over 100 in Fallbrook that day and he said, "She's dying?????" SHOOT. No, she's not dying Dad, never mind. I was losing my patience fast.

I really have been trying to get a hold of his family so that he can go see his 91 year old Step-Mom, but I'm having a tough time getting someone on the phone. I had to tell Dad that they are on vacation, because he thinks we can just get up and go see them. How do you explain to Dad that you have to call someone first before just showing up at their door? There's no reasoning with him. Everything is very urgent and dramatic to him. He has to see them NOW.

On the plus side though, Megan and I had a great day with him yesterday... Yay! Megan finally got a good day. He was sweet and funny and talkative. We took him to an antique store and he was very engaged in everything we were looking at. Sometimes we would look back at him and he would be looking at a picture of John Wayne or sitting in a chair like he was testing it out or asking us questions. We listened to Frank Sinatra station on Pandora in the car-ride and he was singing along to everyone song.

We also saw Dad's girlfriend and he told her to "go get on your mop and fly away." (Basically calling her a witch.) She responded by saying that they were over and done with. Dad took his hand and dramatically wiped it across his forehead and said, "Whew!" Then they both laughed. I don't think he'll be getting rid of her that easily!

The video below is a conversation that we had with him in the car. We were teasing him and making him laugh... and then he said some funny things... :)

Teasing

Yesterday was World Alzheimer's Day and I would like to share with you a couple facts from the 2010 Alzheimer's Report:

-The total estimated worldwide costs of dementia are US$604 billion in 2010.

-These costs account for around 1% of the world’s gross domestic product.
-If dementia care were a country, it would be the world’s 18th largest economy, ranking between Turkey and Indonesia. If it were a company, it would be the world’s largest by annual revenue exceeding Wal-Mart ($414 billion) and Exxon Mobil ($311 billion).

Wow! I'm glad we're doing our part by spreading the word and fund-raising for The Memory Walk. Thank you again to all who have donated. We're now at $1380.00!!!!!

Megan and I visited Dad today and kept his bad mood at bay. I brought him a box full of pictures and mementos from his 70 years of life. I loved that I could hand him an old photo and he would be able to name the person pretty quickly. He also told us a few stories from his childhood. I think seeing all those things gave him a sense of who he is again and in turn put him in a good mood. Even though he would say "I told them, I'm not staying here anymore," it didn't spoil his mood and we spent a lot of our time today laughing and joking around.

My Mom's name came up and he said, "Oh, Paula. She was mine." Then Megan said, "Yeah, but you're divorced now." And he said, "Oh, you knew her, did ya?" We were laughing and he looked confused so we told him that she was our Mom. Once he realized, he smiled and said, "Dad put out some good stuff."

Sometimes we get a kick out of teasing him a little. Like today when I asked him which one of us is Megan. Smiling, he looked back and forth at us and then chose correctly. Next I asked him what my name was and he couldn't get it until Megan prompted him a little. Then he called me Kristen Lips Kristen. I guess I have nice looking lips?

Before we left, we sorted out all his clothes and took a big basket full of clothes, pictures, cards etc. to the office that didn't belong to Dad. He really racks up the goods. Every time he complains about people stealing from him, I just want to yell, "you're the worst one!!!"

Video below is of Megan and Dad having a good time. I was so happy to get a good picture of the three of us too! Usually one of us has to take the picture!

A Few Boxes of Memories

We're done with Dad's mobile home. My Mom, Blake, and I finished cleaning it out yesterday. Moving the Sego Palms practically threw out Blake's back, so while he lay on the ground with the heating pad, we sorted through the rest of Dad's clothes and piled everything into the truck.

The new owner is moving in later this week and we can close the chapter on this part of Dad's life. It's a little sad. Anything important that he owned can pretty much be condensed to a few boxes. I still feel sad that I don't know more about Dad's life. I've found more newspaper clippings and cards/invitations. It looks like he joined The Air Force straight out of high school (found his complete and official file with every order given while he was in the Air Force) and then got married at age 19. A few years later, my half brother and sister were born. I'm kind of putting the pieces together. :)

I also found my Dad's baby book and under 'remarks' his Mom wrote, "He wasn't very pretty at first but later on he got so good lookin that we realized we had a real good and pretty baby boy." Hahaha. His baby hair is still taped to the book from his first hair cut. It's a blond/brown... kind of like Megan's when she was little.

Then I found a bunch of pictures with nothing written on the back. Not sure if anyone can tell me who the people are in the pictures. It could be my Grandparents or Great-Grandparents, but not sure. Don't know if I'll ever know.

Nervous to go see Dad this week. Don't know what his mood will be.

The Short Straw

Megan's been picking the short straw lately it seems. I had such an amazing day with Dad earlier in the week, but unfortunately she's been tackling all the bad days. After her visits with him she's exhausted and doesn't feel like she can handle another minute of him and I don't blame her.

She took him shoe shopping at Wal-Mart (we were told that he needed new shoes since he had peed all over his old ones). This proved to be a little difficult because Dad couldn't tell Megan if the shoes fit when she asked him. All he cared about was trying to get his job back at Wal-Mart. We won't be taking him there again. It's too annoying.

The anger really began when they pulled back in to Whittier Place. "No, I told you, I am not doing this. This place is a Dungeon, I don't want to be locked up anymore." She got him back inside and that's when the tantrum happened. He was.... pacing up and down the hallways, knocking all his hats of the hat rack, showing her how he knocked the screen out of the window, packing up all his stuff and piling it by the door, yelling at Megan. Just unmanageable and extremely frustrating.

The staff tried to offer him Ice Cream so that Megan could slip out unnoticed, but he insisted on walking her out and then pushed his way out the gate. Megan had to go all the way back in with him and leave a different way. As she was leaving, she could hear them saying, "Come over here Dave. Have some Ice Cream with everyone." And he just yelled, "No!! They lock you up... I don't want this." She kept describing Dad's behavior as 'dramatic' because he was acting like we locked him up in an insane asylum or the county jail when in actuality his home is very nice, comfortable, and the best he can get.

Megan is convinced that it's only a matter of time before Dad escapes again. These thoughts are just consuming him and he doesn't seem to be forgetting how much he hates the place. I really hope that's not the case.

Blake and I will be going down to Fallbrook this weekend to help my Mom clean out the rest of Dad's mobile home. The new owner moves in next week and we still have plants, tools, trash, clothes, and miscellaneous stuff to get out of the house. I'm not sure which I'd rather do... deal with Dad throwing a tantrum or finish cleaning out his place. Neither one sounds great, although at least I have help with my task-- Megan was dealing with it alone.

I want to remember every minute of the hour I spent with Dad today. He was so sweet it nearly broke my heart and actually made me cry. I love seeing my Dad happy.

When I first got there he was coming down the hall with a herd of residents getting ready for lunch. Once he saw me, he kept trying to get around the slow old ladies in front of the pack, but he had to wait until there was an opening. With his girlfriend Tabitha at his heels, he finally broke free and came over to hug me. As usual Tabitha said, "She is so pretty. She must look like her mother." Within minutes though, Tabitha's whole family showed up to take her out for lunch for her birthday. She was so moved to see all of them, that she started crying and told me I could take the chair next to my Dad since she will be eating out. She told her family, "That's Dave, he's my boyfriend." And Dad said, "Who? Me?" They crack me up.

Apparently I was the bearer of good news for my Dad who was already in great spirits. I told him that his friend Mike was coming to visit on Tuesday and that Mike was trying to get another mutual friend of theirs to come visit some time as well. Dad has become obsessed with their mutual friend lately and you would have thought that I told him he won the lottery. He was in shock and kept telling me "thank you" and "you did this for me?", and looking at me like I was an angel. Then with tears in his eyes, he grabbed my hand, and said slowly, "I love you so much." Please, break my heart just a little more, Dad.

He went on and on, "I won't spank your butt. I'll probably kiss you..... You are the sweetest girl I ever met in my life.... I'm gonna tie you up and not let you go. No big deal." We also called Megan so she could experience some sweetness and he didn't disappoint.

Part of me is thinking -- I didn't do anything for you to be so grateful, but of course that's not true. Megan and I do everything we can to make him happy, so it was really nice to feel appreciated. And, he has no idea how many people I have contacted and are trying to contact to keep them involved in his life.

Update on The Memory Walk: We've fund-raised about $1000 so far and I know we're still going to do more. Thank you to family and friends who have already donated. I also find it so touching how many acquaintances have been so generous in donating and how many people have donated in honor or memory of a loved one that suffered from Alzheimer's. So many people are affected by this disease. I keep telling people that with a disease that can make you feel so helpless at times, it's nice to feel like we're accomplishing something by fund-raising. I encourage you to donate if you haven't already! Please! You can click on the Memory Walk link under "Helpful Links" to the right to get more information.

Picture above is when Dad told a joke and cracked himself up. Video below is just a taste of how cute Dad was....

Crab Bottom

I love the title of this blog because Dad used to call
Megan a 'Crab Bottom' every time she was grumpy. If you know Megan, she's not really a morning person and Dad would try to get her out of bed early and she would not do it. (He also called her 'Dungeon Breath' in the morning. He loved to tease her.)

Okay, enough of Memory Lane. Crab Bottom should be Dad's middle name lately. It's been 2-3 weeks of him being more grumpy than happy. I'm training for a new job this week, so Megan has been dealing with him -- calming him down over the phone and visiting. When she arrived today, Dad was standing in the dining room yelling at the Director of Memory Care and brandishing his address book, "There are all these people who want to see me!" Then he started naming all these people from his past. The director was so relieved to see Megan. I wonder how long they had been having that 'conversation' in the dining room.

As usual he kept saying that people were taking things from him and how he wanted to get out of there BLAH BLAH BLAH.... we know Dad! Then he would obsessively pull out coins from one pocket and put them in another pocket.

After trying to reassure Dad that all of his stuff was still in his room, Megan decided to call Dad's brother Doug. Until last year, Dad and Doug hardly talked. Sometimes 10 years would go by and they wouldn't talk. Don't get me started on the family relations on Dad's side. It's a mess. The important thing is that they started talking again and I called him a couple weeks ago to tell him where Dad was living.

Megan said the conversation went pretty well and Doug wants us to write him a letter with all the information about where Dad lives, so that's just what they did when they got off the phone.

Dad was able to write Doug's name (it looks like a child's hand-writing) and tried to write Brandt but it came out like this: brant d
Not too bad. He told Megan what he wanted to say:
'Doug, Let's get together. From Brother Dave.'

Brother Dave. I just think that's the cutest thing ever.

Dad has a new roommate too which I think is contributing to his grumpy mood. He'll get over it, I hope.

I know we're doing our part to accommodate Dad and to keep his family and friends in the loop, but some days I feel bad that we can't take him to see more people. Our Grandma Olive, Dad's stepmother, is still living in Upland and I feel the need to do a reunion soon. I want to give Dad whatever closure he can get from seeing some of his people again because we all know that it's quite possible there won't be many more visits. People are busy, Dad's getting worse... etc. Maybe I want the closure for him-- Or, at least, I want to feel that we gave him that option. So, next on the list is getting him up to see his extended family in Upland. We'll just have to make the time to do it. (Megan stole his address book today, so we can try to get in touch with more people.)

You Guessed It, Another Lady Friend

Dad's doing much better this week. We realized after Dad's angry outbursts last week that it had a lot to do with his room being locked during the day.

The reason the staff at Whittier locked his room is because he has another lady friend. I am telling you, he must be coated in sugar or something, because he can't go very long without one of these ladies latching on. This lady is the crazy outgoing one that I talked about a few weeks ago... Tabitha. EVERY TIME I see her and sometimes every ten minutes, she says the EXACT same thing, "Oh, is this your daughter? She's very beautiful. She must look like her mother." Then she laughs. Ouch for Dad.

For the most part, she's very annoying and everything that I say or my Dad says, she turns into a song. It's actually kind of funny cause she snaps her fingers and tries to dance to the song that she made up. I especially like the song entitled, "Let's Go Water The Plants." But hopefully Dad doesn't say anything gross like "There's a Squirt In My Underwear". That probably won't be a #1 hit Tabitha. Anyway, she follows Dad around everywhere and is pretty possessive of him. If we weren't his daughters, she would probably be upset that we are spending time with him. I do think she annoys him sometimes, and the staff makes sure that he doesn't have to spend the entire day with her.

Because of the new lady friend, the staff was worried that the two of them would be 'up to no good' in his room, and since they can't be monitored every minute of the day, they locked Dad out of his room. In Dad's eyes, that meant that everything was stolen from him. As the Director of Memory Care said, "I didn't realize, but by locking his room, I am taking away the only part of this place that is his. I apologize, I will go unlock it right away." Ever since they unlocked the room, he's been back to his normal self.

I also brought him a little pouch of Canadian and Mexican coins that we found in his house. I know he likes to carry it around in his pocket and I think that keeps him happy and distracted.

The Scabies is gone! Finally. When Megan was at the check-up, the hyper Dermatologist came in the room and gave her a boisterous high-five. This doctor is so crazy and he reminds me of our Pastor growing up because they both get very energetic over little things. Then the dermatologist actually scared Megan by whispering in her ear when she was leaving, "I hope my daughter is like you some day." Apparently his kids are going to be our age when he is 70.

Taking Action - Memory Walk

KEY FACTS ABOUT ALZHEIMER'S DISEASE

5.3 Million People Have Alzheimer's in the U.S.

7th Leading Cause of Death of People of All Ages, 5th Leading Cause of Death After Age 65

172 Billion Dollars in Annual Costs

10.9 Million Unpaid Caregivers

"With a rapidly aging baby boomer population, Alzheimer's will continue to impact more lives. From 2000-2006, Alzheimer's disease deaths increased 46.1 percent, while other selected causes of death decreased. Strategic investments in other diseases have resulted in declines in deaths, and we need to see the same type of investment for Alzheimer's."

"Unless something is done, by 2050, up to 16 million Americans will have Alzheimer’s, and a new case will be diagnosed every 33 seconds."

More Facts and Figures Can Be Found At:
http://www.alz.org/alzheimers_disease_facts_figures.asp#key

Our family has started a team for the Memory Walk 2010 this November 6th in Huntington Beach. We would love to invite any and all who would like to walk with us and/or donate. I've never fund-raised before and I've set our bar high, but we're passionate about donating to the cause. I started with a $25 donation because that's really all I can give at the moment and I would like to encourage other donations no matter what the amount.

If you would like more information or would like to join our team you can copy and paste this link below or click on the link under "Helpful Links" at the top right of the blog.

http://memorywalk2010.kintera.org/faf/search/searchTeamPart.asp?ievent=337980&lis=1&kntae337980=63E472F955FA4164896B70A33C61A586&supId=0&team=3886904&cj=Y

November 6th is only about two months away! More information to come soon!

Anger

Dad isn't doing well this week. He is saying things that he hasn't said in months like, "I'm locked up. I can't go nowhere. I just want to get out and see my family." But, something was different this time. This time he is a lot more angry. I had to go over to Whittier yesterday to make him feel better, but today Megan got the brunt of it.

We had his check up with the Dermatologist and the rash is getting better... slowly. The minute Megan brought Dad back to Whittier Place he was adamant about not going back. Somehow she got him back in and had him take an anti-anxiety pill. While waiting for it to kick in, Dad was ranting and raving about being locked up and how he can't take another day of this. He was angrily pacing up and down the hallways and everyone was staring at him.

Megan called me to have me talk to him but he basically yelled at me on the phone about how we locked him up and then wouldn't talk to me. I could hear him in the background complaining non-stop. A couple minutes after hanging up with them I got a text from Megan, "Dad is crying."

Then he got angry again and Megan told him that he seemed very angry and he should try to calm down. "Of course I'm angry. This place is shit! S.H.I.T. That's how you spell it." I laughed out loud when she told me this and she said there were moments when she wanted to laugh too but didn't want to upset him more. Apparently he kept saying, "I haven't killed anybody. I didn't kill anyone. Why am I in here?"

After trying to talk to him for half and hour, she finally gave up because he was so mad. Dad wouldn't say goodbye to her and he said meanly, "Just forget about you. I'll be fine." She asked him to say by to her and like a little kid yelled, "No."

Megan left crying.

I know Dad's Mom had a lot of angry episodes in her Alzheimer's days and so far Dad has mostly sweet, confused, or sad episodes. I hope this isn't a sign of what's to come in the future. But it probably is. The worst part is that we can handle most of the other mood swings, but I think when Dad gets angry it upsets us and brings us back to our childhood memories of 'mean' Dad. We don't think of him as that person anymore but it doesn't mean that we don't remember how scared we used to be when he yelled. It almost always made us cry.

He's absolutely harmless now and we know that. We'll just have to toughen up as things get worse. Just another awful part of this disease.

Clues to Dad's Mystery Past...

Most of what we know about my Dad's past was told to us by our Mom. He never liked to talk about his early childhood since that was a little rocky, we never heard stories about what my Dad did for the first 40 years of his life before meeting our Mom, and we never knew anything about his Dad's side of the family. Obviously, we do know that Dad was married twice before my Mom and had two children from his first marriage -Kelly and David. We know some facts, but would like to know the stories.

Blake's Uncle John, who's hobby is tracing family trees, was able to find a little bit of information recently about the Brandt family but that was all we had. Until now.

Last week we went to clean out Dad's mobile home in Fallbrook in 100 degree weather... great timing. We found some interesting photos and information about Dad and his family. The baby picture to the right is of Dad, and we found his 10th Grade yearbook where his friends called him "a swell guy", and we now have his High School Letter from John Muir High School in Pasadena. I think it was from playing football and baseball.

Mom always told us that Dad was in a bowling league but this picture of him bowling at age 23 (Megan's current age) is just amazing!!! Megan just stared at the picture and tried to imagine him at her age. And it's just amazing to see my Dad as a young person in his twenties. We don't have many or any pictures of him at this age. He's so cute.

We also found pictures of Dad's Grandfather who we know almost nothing about. One was taken some time in the late 20s or early 30s in Pasadena and the other was found with his "Chauffeur" certification when he lived in Chicago in 1914 and worked as a taxi driver. Once he moved to Pasadena he became a gardener for a private family (from what Blake's Uncle told us) and/or a botanist teacher (which is what it says on the back of the photo). Must have been where Dad got his green thumb. Dad doesn't remember him since he was only 1 year old when his Grandfather died.

The last photo we found was a picture from the 30s of Dad's Dad in the infantry when he was around 18-20 years old. He died at age 61 in 1976.

I'm sure this is pretty boring to everyone else, but to me and Megan it's like finding lost treasure. It's also sad. How else are we supposed to learn about Dad's past and family?... it's not like he can tell us! The only person that has known my Dad since high school and is still in his life today is his friend Mike O'Rourke. We're gonna have to pick his brain some day t0 learn more about Dad's early years. Dad's stepmother, Olive Brandt, and her whole side of the family is still living in Upland and surrounding areas... I need to get a hold of them.

What we do know about Dad as a person is that he was an awesome cook, an awesome gardener, an awesome fisherman, and he collected SO MANY COINS. We don't know what to do with all of them. He doesn't seem like the coin collecting type, but someone got him into that. We'll never know the story behind that. We also have hundreds and hundreds of photos of him fishing and holding up his catch. But, who taught him to fish? Who taught him to garden? His Dad, maybe, now that we know it runs in the family. Or maybe those were just things that every kid knew how to do back then. These are the stories that I wish I knew. Unfortunately all that information is lost inside him. To this day, I kick myself for not getting the recipe to his Teriyaki sauce. How would I know that at 17 years old I should have been asking him to write down recipes or tell us stories about what made him the person he is now?

Had to add this fishing picture! AMAZING!

Happy Daddy

I think it would be a lot less enjoyable visiting Dad if we didn't just love the place he is living. Yesterday they were celebrating two birthdays and the staff had baked two cakes decorated with colored sprinkles. Everyone was gathered in the activities room waiting for the cakes to arrive. In the meantime, music was playing and one of the newest patients wanted to dance. Now, this woman can command a room. She was dancing with a staff member and talking loudly trying to get people to dance. When she made her way over to Dad, he introduced us as his daughters and the lady responded, "These are your daughters? They are beautiful." I told her, "Well, I think you're my new favorite." And she whispered to me, "Don't tell my daughters that. They think I'm goofy." Then Dad mumbled, "Yeah, you got that right." She went back to dancing and then Dad and I got up and started dancing as well.

Once the cakes arrived, the staff put hats on the birthday girls, took pictures, and we all sang Happy Birthday. It was the sweetest thing. One woman responded, "I didn't even know it was my birthday." Before blowing out the candles, they were supposed to make a wish, and while the lady was thinking of her wish, the new patient yells from the corner of the room, "A wish to get rich!" She was cracking us up all day. Megan and I have a feeling that Dad is going to get along with the newbie very well!

Dad was in an extremely good mood all day and was so delighted that we were there with him. He kept looking at us like he couldn't believe we were his daughters and there was so much love in his face. Some days he's more like a child, but yesterday he was more like a father and it was a nice change. Walking down the hallways, Dad is all smiles and says hello to all the staff. Oh, and there are the cutest pictures of Dad on the Bulletin Board gardening, dancing, and on what looks to be Cinco De Mayo he is smiling at the camera wearing a huge sombrero and holding a virgin margarita! Ole!

Earlier in the morning, Megan and I had a small meeting with the head of the Memory Care to discuss Dad's assessment. She decided to reassess Dad and take off the charges for 'status checks' every hour since he isn't trying to escape anymore (that was costing about $500/month). On the other hand, Dad is having issues with using the Bathroom. We're pretty sure at this point that he pees in his closet daily. It's even worse when there are clothes on the floor because he'll pee on them and then a couple hours later hang them back up. He also peed right in the corner of the hallway outside of the office a couple of days ago. I'm not sure if he thinks he sees a toilet, or thinks he's outside, or just sees a corner or dark area and wants to pee there. Putting him in diapers wouldn't solve the problem because he's not wetting his pants, he still knows how to go to the bathroom.

Whittier has decided to do the following: On laundry day, they are going to wash ALL his clothes no matter if they are hanging in the closet or laying on the floor. They're also going to do a small cleaning every day of his closet and room. Lastly, the staff is going to ask him throughout the day if he needs to use the restroom and then gently prompt him on where to do it. Dad's very independent so they may not always catch him peeing, but at least now they can try to monitor the situation a little bit better. Consequently, the $500/month they took off his assessment from trying to escape is basically back on because of the new services added. At this point, I can't blame them. They've done every thing they can to accommodate us and Dad, so it's our turn to help them out. Dad's room and bathroom got make-overs recently and a lot of THEIR money was poured into making the pee smell disappear. It's like Dad is trying to recreate the smell. Maybe he misses it, but I certainly do not.

We're still worried about how thin Dad is and the staff has began to notice as well, so they're going to monitor his eating habits. In the meantime, Megan and I are trying to fatten him up a little when we take him out for lunch or snacks. Next time we see the doctor we'll mention the weight loss again and see what they say.

The Scabies is almost gone. Still there, but less red and less itchy. We see the Dermatologist for the check-up appointment next week.

Below is a video of me and Dad dancing in the Activities Room! He's still got the moves...

Guest Posting on Dimmi Blog

So, I posted a guest post on The Dimmi Blog that I told you all about.
Check it out!!!
http://blog.dimmi.com/

The Business Side of Things

I spent my morning yesterday doing paperwork for Dad... some good and some bad.

We got an offer on Dad's mobile home! And of course we took it! The lady is giving us a down payment and she will pay us rent until the beginning of next year when she will take over the mortgage. So, I signed everything and sent that off.

The other paperwork involved hospital bills from when he was in the hospital back in April after he ran away. We got an ambulance bill for $1000 a couple of months ago and I appealed to the VA for financial help since Dad only has Medicare Part A which doesn't cover ER bills. Then, two months later I got two more bills (this time for the ER)... one for $7400 and another for $1000!!! I don't know why I didn't think about the actual ER bills, but obviously Dad can't afford this, so I am appealing to the VA again and we're contacting a financial counselor affiliated with the hospital.

Unfortunately the process with the VA takes so long that I have a feeling we're going to be sent to Collections... I guess we'll just have to see what the financial counselor says.

Yesterday I was visiting Dad and I checked out his new laminate hardwood floors. The smell in his room is so much better although I think Dad is still peeing in other places other than the toilet. When I was picking up his dirty clothes from the bottom of the closet they were all wet. Wet with pee, oh goodie! I pulled all the clothes out and even though laundry is generally done on Tuesdays, Whittier place said they would wash all his clothes for him. I noticed that the closet door is always open and the bathroom door is always shut, so he probably doesn't even think about the bathroom, he just knows that he has to pee and ends up walking to the open door.

Dad's roommate is also gone. They didn't tell me why, but it's too bad because he was really a sweet guy. I informed the manager of the Dementia Ward that Ken's family may be calling about some missing clothes because when I looked in Dad's closet, most of the clothes were Ken's.

Apparently Dad helped the activities coordinator plant some radishes and summer squash in the garden. We spent some time watering all the plants and we ate a couple of the tomatoes off the tomato plant. He really has a great home at Whittier.

Later during my visit, we all walked to the big dining room so they could do their daily exercises and trivia. As we were walking down the hallway, I could hear a couple of the patients behind me say, "Where are we going?" and someone answered, "I don't know. I forgot." "Oh, Okay." I was giggling to myself because it was so sweet and so true.

Dad's rash is getting better but he is still itching like crazy. He took his second dose of Scabies medication yesterday so hopefully it really kicks in. I attached a photo of Dad's new floor and a video of him trying to do the exercises (I love the confused look on his face). He is the least coordinated out of all the patients. When they are doing arms exercises, he moves his legs and vice versa. At least he is involved with the group activities.

I've also been asked to write a post on another blog. The blog is about feeling better no matter what condition/cause your experiencing. I don't think they've had anyone write about Alzheimer's yet, so that will be a nice addition. Here is a link to the blog http://blog.dimmi.com/
I'll let everyone know when I write something.

Dermatologist

So the dermatologist thinks Dad has scabies, EVEN THOUGH, Dad has already done the treatment for it, and no one else has gotten it (it's pretty contagious), and the health dept said that it wasn't Scabies. He even did a skin scraping and looked at it under the microscope and didn't see anything. Regardless, the dermatologist said he had to follow his gut feeling... Scabies. I believe him, I guess. We have another appointment in two weeks so if the rash is still there he'll have to try something different.

He prescribed an oral medication because he said that the creams aren't strong enough and that's probably why it didn't work the first time. They also gave Dad a shot in the butt to help the swelling and itch. He also said he's seen cases where a married couple can sleep in the same bed every night and only one person will have Scabies. And just because they scraped the skin, doesn't mean a bug got picked up in that specific scrape, so it's possible that they wouldn't see anything under the microscope.

Whittier Place had called me that morning to say that Dad hadn't been sleeping really at all. (No wonder he'd been falling asleep in the middle of the day lately.) The other day I was driving Dad somewhere and when the light turned green and I stepped on the gas, Dad gasped so loud. Apparently he had fallen asleep and then was scared when we suddenly started moving again. The Derm suggested that the itch could be keeping him up at night, and he also prescribed a prescription strength Benadryl that should help.

Below are two of the CUTEST videos of Dad EVER... singing Ray Charles' "Georgia" and "I Got A Woman".... while waiting for the Dermatologist...

Try to find the Upside...

While I was watching Dad eat lunch today my inner monologue was taking control. He's not much for conversation so I have a lot of time to think and I found it intriguing how many emotions and thoughts can go through my head at one time. I can feel amused, concerned, sad, annoyed, judgmental, happy.... the list goes on. I also find myself writing blogs in my head as the moments are happening.

Today I was feeling all of those things. I was amused by how Dad is so much like a little baby who is discovering things for the first time. He took a sip of diet coke today and looked at me like it was the most amazing thing he'd ever tasted.

I was annoyed about Dad's rash still being awful, judgmental toward myself because I took him to a taco place and it became very difficult for him to eat without spilling all over himself, happy when Dad started cracking jokes and being silly, concerned because he's lost too much weight and his face is sunken in. But mostly the last couple of days, I've just felt sad.

I started thinking of the memories I have of Dad when he was normal. The last time that I have spent this much time with him was probably when I was in high school. Maybe? (I was very busy with extra curricular activities and we didn't live with him, so maybe not.) Even then I only have a few memories of him cooking and taking us on some fishing trips or over to Walmart on his day off. I have childhood memories too... some bad and some good but it seems so long ago.

Dementia has been taking over for the past 6 years, and it's sad that many of the memories I have of him are from this time. I also think that the memories we are making now are beautiful for what they are, but I just wish they didn't overshadow the Dad we had in the past. We never got to have that Father/Daughter adult relationship. It basically went straight from Him being the parent to Us being the parent.

Most of my sadness isn't for me and Megan though. Most of the time I am sad for Dad. He's only 70! But because of this monster of a disease, he won't get to enjoy being a Grandpa, or being in retirement and going on numerous fishing trips. Instead, he lives his life in a daze, closed off from the rest of the world... when I found him this morning he was sitting hunched over in the dining room with his head almost touching the dining table fast asleep. When I slowly woke him up, he had drooled on his sweatshirt. He's swimming in his clothes because he has lost so much weight. I'm sure it's not the quality of life that he ever envisioned for himself. The next ten years could have been a nice time for him. The twilight years where you enjoy life and family. Blake and I are only in our late twenties and we fondly look forward to that.

Writing that just made me cry.

On the other hand, he still has such a bright spirit around him most days. He thoroughly enjoyed chips and salsa at the taco place today. When we were leaving the restaurant, he started dancing salsa to the music. The people in the booth next to us were clapping and laughing. At Fantastic Sams, Dad was showing the lady how good he was at funny voices and animal sounds (definitely good childhood memories). She was cracking up and patting him on the back. We were singing along to Bette Midler's "Slow Boat to China". Today he called me "the best lady, the rest are all dodos."

Sometimes the sad thoughts are there so I deal with them but try not to linger on it. I've always been good at focusing on the positive, so I need to continue to do that. That is why the blog is called 'the upside to dementia'. And here is the upside, in my opinion...

Megan and I have more of a relationship with Dad now than we ever had before. And we're creating memories with him that we wouldn't have if he was healthy and living in Fallbrook. I think that's a pretty good upside.

A quick note about how Dad is doing...

Two things have been very consistent with him lately. The rash and the smell of pee in his room.

He's been such a trooper with this rash... it's STILL there and STILL itching him like crazy, and I never got a call from the VA about an appointment to see a Dermatologist, and they were quite rude on the phone today suggesting that I should just take him into the ER if I was that concerned about it. Oh, I'm sorry!... but what is an ER doctor going to tell us that a regular doctor hasn't already told us... we need to see a Derm! So, we got him an appointment in five days at a place nearby where he can just pay cash.

Also, they moved Dad and Ken out of their room temporarily because the smell of urine is still so strong. After ripping the entire bathroom apart a month ago and replacing the cabinetry and flooring, the staff at Whittier are now ripping out the carpet, treating the cement with chemicals, and then putting down linoleum. They also washed the walls. We bought Dad another plastic cover for his bed to prevent the mattress from getting wet in case he doesn't get up in the middle of the night. I hope and pray this works. All I can do is thank Whittier Place for taking this seriously and spending money to do everything in their power to fix the problem.

Despite all this, Dad does seem happy. When I walk down the halls of Whittier Place, I've spotted him smiling in some of the pictures on the walls.